COVID-19 Advice

NORTH WEST, NORTH WALES AND ISLE OF MAN CONGENITAL HEART NETWORK

Advice for patients and families affected by congenital heart disease and children with other heart conditions

 

Updated Consensus Statement 24/08/20

We appreciate that patients and families continue to be anxious. We would advise that everyone regardless of their age follow the advice being provided and updated regularly on the NHS and Government websites.  The coronavirus pandemic (COVID-19) has affected a large number of people over the previous months.  There remains very little evidence relating to patients with congenital heart disease (CHD) and the risks of infection with this new virus.  So far, it appears that most children with CHD are unlikely to be at any greater risk of COVID-19 than those in the general population. Evidence from around the world suggests the disease is much milder in children and, in fact, some may show no significant symptoms at all. The risk of becoming very unwell due to COVID-19 is very low for children and younger adults.

Stay at home if you or your child have any of the symptoms listed below and contact 111 or 119 to arrange a test as soon as possible

Most people will have mild symptoms and will recover from this virus without needing to attend hospital and will have at least one of these symptoms:

  • a high temperature – this means you feel hot to touch on your chest or back (you do not need to measure your temperature)
  • a new, continuous cough – this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual)
  • loss or change to your sense of smell or taste – this means you’ve noticed you cannot smell or taste anything, or things smell or taste different to normal

Check Your Symptoms

For Advice About What to Do & How to Arrange a Test

Self Isolation Guidance

Get an Isolation Note
You don’t need to get a note from your GP if you have been asked to self-isolate.

Stay Alert

We can all help control the virus if we all stay alert. This means you must:

  • Limit your contact with others
  • Stay at home as much as you can
  • Work from home if you can
  • Keep your distance if you go out (2 metres apart where possible)
  • You must wear a face-covering if you are unable to keep your distance. This is now mandatory for public transport, visiting hospitals and in shops etc.
  • Wash your hands regularly
  • Self-isolate if you have symptoms for 10 days or until your temperature has settled
  • If someone in your household has symptoms then you will need to self isolate for 14 days even if you feel well
  • If you develop symptoms arrange to get a test as soon as possible after your symptoms develop

If you are contacted by the “Track and Trace” system and told that you have been in close contact with someone who has recently tested positive for COVID-19 you will need to self isolate for 14 days.

This advice is changing regularly. To keep updated about what you can and cannot do click the link where you live. This advice may change depending on the level of the virus so you are advised to check this regularly. Please note there is different advice depending on whether you live in England, Wales or The Isle of Man:

What You Can & Cannot Do…

In England

In Wales

In the Isle of Man

If you live in an area that is experiencing a local COVID-19 outbreak and where local lockdown measures have been imposed, different guidance will apply. Please consult the local lockdown guidance to see if any restrictions are in place in your area.

Link to Local Lockdown Advice

Please do not attend unannounced at any of the hospitals that provide care for patients with congenital heart disease or go directly to your GP practice,  A+E or pharmacy

  • If your or your child’s symptoms get worse and you cannot cope at home then go to NHS 111 online and complete an online assessment
  • If you do not have access to the internet, phone 111 directly
  • You may be on hold for a long time. Be prepared to wait and keep your phone charged up
  • If you or your child feel very unwell and can’t cope at home call 999. Tell them that you think you have symptoms of COVID-19 so they can prepare to pick you up safely
  • Explain that you, or your child has an underlying congenital heart problem. Please take a copy of your last clinic letter with you. Our NHS is extremely skilled in looking after sick patients and it will help them to look after you or your child safely if they have this information. They can call the “on-call” congenital heart team for advice 24/7 via the switchboards listed below:
  • Alder Hey Children’s Hospital: 0151 228 4811 (paediatrics)
  • Manchester Children’s Hospital: 0161 276 1234 (paediatrics)
  • Liverpool Heart and Chest Hospital : 0151 600 1616 (adults)

 

For Babies and Children:

  • Call 111 if you’re worried about a baby or child under 5.
  • If your child seems very unwell, is getting worse or you think there’s something seriously wrong, call 999.
  • Do not delay getting help if you’re worried. Trust your instincts.

For advice about what to do if you are worried that your child may be very ill, click here.

The Royal College of Paediatrics and Child Health (RCPCH) has also produced a useful to guide to help parents know when to seek help for their child when they are unwell. To view the poster, click here.

The NHS is still able to provide urgent care

Please attend A+E for other emergencies as normal

  1. For all other health information and advice, use the NHS website or check your GP surgery website
  2. For urgent medical help, use the NHS 111 online service. Only call 111 if you’re unable to get help online
  3. For life-threatening emergencies, call 999 for an ambulance
  4. If you think that the symptoms may be due to you or your child’s congenital heart problem (they don’t have a temperature or cough) make sure you are clear about this when you arrive. Ask the A&E staff to liaise with the congenital heart team for advice who are on call 24/7. Particularly if they are considering putting you in a ward with other people who may be ‘breathless’ because of COVID-19

If you need non-urgent advice regarding you or your child’s congenital heart condition please contact your CHD helpline to speak to one of the Nurse Specialists.

Guidance published by the British Congenital Cardiac Association (BCCA) together with Clinical Reference Group (CRG) and NHS England has identified patients with congenital heart disease who may be vulnerable to severe complications from COVID-19.

As the Government continues to ease restrictions, you are advised to follow the general advice taking extra care to observe social distancing.

BCCA Guidance

Patients who are vulnerable:

  • Single ventricle patients and those with a Fontan circulation
  • Infants < 1 year old with unrepaired congenital heart disease requiring surgery or catheter intervention e.g. VSD, AVSD or tetralogy of Fallot
  • Those with cyanosis (oxygen staturations <85%)
  • Patients with severe heart muscle disease (cardiomyopathy) requiring medication
  • Patients with CHD on medication to improve heart function i.e. heart failure
  • Patients with pulmonary hypertension (high blood pressure in the lungs)
  • Patients with CHD plus other significant co-existing conditions e.g. chronic kidney disease or chronic lung disease.

Patients with reduced immunity e.g. patients with Down syndrome, or chromosome 22q11 deletion (Di-George Syndrome) and those taking long-term penicillin to prevent infection because of the lack of a functioning spleen should also follow the recommended guidance around social distancing.

Expert doctors have identified certain medical conditions that place someone at greatest risk of severe illness from COVID-19. Clinically extremely vulnerable people may include the following:

  1. Anyone who has had a solid organ transplant
  2. People with specific cancers:
    • people with cancer who are undergoing active chemotherapy
    • people with lung cancer who are undergoing radical radiotherapy
    • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
    • people having immunotherapy or other continuing antibody treatments for cancer
    • people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
    • people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
  3. People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD).
  4. People with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell).
  5. People on immunosuppression therapies sufficient to significantly increase risk of infection.
  6. Women who are pregnant with significant heart disease, congenital or acquired.

The following patients with congenital heart disease are also thought to be clinically extremely vulnerable:

  1. Patients with severe high blood pressure in their lung arteries and who are taking special medication to treat this.
  2. Patients who have been accepted for an organ transplant and are on the active transplant waiting list.

The advice for those who had been told to “shield” is changing. Thankfully the number of people with the virus is coming down and this means the risk to you has reduced. If you have been identified previously as someone who needs to shield you are advised to continue to still be vigilant at following the advice

If you’re clinically extremely vulnerable, you’re strongly advised to still stay at home as much as possible and keep interactions outside to a minimum. If there is an outbreak of COVID-19 within your area, please follow any guidance set out locally. This may mean that you are asked to shield again if this happens.

What has changed?

From 1 August, the government paused the shielding programme in England. This may change again if the transmission of COVID-19 in the community starts to rise significantly.

This means:

  • The Government is no longer advising you to shield
  • The support from the National Shielding Service of free food parcels, medicine deliveries and care has stopped
  • NHS Volunteer Responders will carry on delivering food, prescriptions and essential items to you if you need it. If you have not registered before you can self refer for this support at any time:

https://volunteering.royalvoluntaryservice.org.uk/nhs-volunteer-responders-portal

You may still be at risk of severe illness if you catch coronavirus, so still stay at home as much as you can and continue to take precautions when you do go out. You can do this by washing your hands regularly, avoiding touching your face and keeping 2 metres away from people outside of your household or support bubble wherever possible.

From 1 August, you can if you wish to go out to more places and see more people, for example:

  • You can go to work, as long as the workplace is COVID-secure – but carry on working from home if you can
  • Children who are clinically extremely vulnerable can go back to school (when the rest of their class goes back)

You can go outside to buy food, to places of worship and for exercise – keeping 2 metres away wherever possible.

 

Click Below for Relevant Advice for Those Who Are Shielding

In England

In Wales

In The Isle of Man

Advice from NHS for Those Who Are Shielding

Schools and workplaces have had to work hard to ensure that they are able to implement COVID safe practices. The timetable for a return to education and to work is expected to vary across the country.

Returning to school or work should follow a risk assessment based on the clinical situation. School’s and workplaces should have plans to be able to maintain social distancing and other measures to reduce the potential spread of COVID-19. Children and adults who were previously advised to shield can consider returning to school and work from 1st August as long as these measures have been strictly implemented. If you have concerns about how this advice affects you then please call the CHD Helpines to discuss your situation directly with Clinical Nurse Specialists.

The Royal College of Paediatrics and Child Health guidance states that: “on the balance of probabilities, children are more likely to benefit from returning to school when their year group does.”

Some pregnant women with pre-existing severe medical illness were said to be at high risk and were advised to “shield”. This included women who had a significant congenital heart problem. The UK Maternal Cardiology Society published guidance on what ‘significant’ heart disease means in the setting of pregnancy. The guidance around shielding is changing and therefore it is important to follow the advice where you live.

What is a Significant Heart Disease?

  • Impaired left heart function (any cause)
  • A systemic right ventricle (congenitally corrected TGA, Senning/Mustard surgery for TGA) even if well-functioning
  • Hypertrophic cardiomyopathy with abnormal heart function and/or outflow tract obstruction
  • Heart disease due to high blood pressure with thickening of the muscle on the left side of the heart
  • Fontan circulation
  • Pulmonary arterial hypertension (any cause)
  • Cyanotic conditions ie saturation in air < 92%
  • Moderate or severe valve stenosis (narrowed)
  • Severe valve regurgitation (leaking) and moderate if symptomatic
  • Symptomatic coronary artery disease

For further information and answers to questions for pregnant ladies please refer to the guidance that has been published by the Royal College of Obstretricians and Gynaecologists. To view guidance, click here.

Those patients with Brugada Syndrome or Long QT Syndrome (Type 3) will be at increased risk from COVID-19.  This is because fever can induce dangerous rhythms. There is no evidence that this is any different to the risk caused by other illnesses that result in high temperature.

There appears to be no increased risk for all other patients with rhythm problems including:

  • Long QT Syndrome
  • CPVT
  • Patients with congenital heart block
  • Patients with a permanent pacemaker who have a normal heart

PH patients were advised to “shield” during the COVID-19 pandemic.  Consequently in March, the UK centres all agreed to suspend blood testing for everyone prescribed an Endothelin receptor antagonist (Ambrisentan, Bosentan or Macitentan).

The shielding programme was paused on 31st July 2020.  Your monthly regular blood testing from this date will be re-instated. Please note there is no immediate urgency, as we do not want the GPs, phlebotomy services, labs or the team at your centre to be overwhelmed in the very first week.

New Guidance from 1st August:

  • Bosentan (Tracleer and generic brands) – Monthly liver function test and 3-monthly full blood count
  • Ambrisentan (Volibris®) – 3-monthly liver function and full blood count
  • Macitentan (Opsumit®) – 3-monthly liver function and full blood count

Advice from The PH Centres

For General Advice Relating to Patients with PHT & Coronavirus

Outpatient Clinics

DO NOT come to the out-patient clinic if you or your child have a new cough and/or a temperature or have been in contact with anyone with coronavirus symptoms. Please phone your patient help-line to inform them that you are unable to attend.

All patients due to be seen in an outpatient clinic in the coming weeks are being reviewed and cases prioritised by a consultant who specialises in congenital heart disease. This is likely to be the consultant that knows you or your child well. Hospitals are now restoring some of the routine clinic activity that was initially delayed or cancelled because of the pandemic. This will enable more complex patients who need an ECG and ECHO to be seen back in the clinic. Both paediatric and adult services are continuing to provide urgent clinics each week for patients who are unwell. Although it is important that  clinic activity is restored it is imperative that it is done safely for everyone and therefore the following guidelines will apply:

  • The number of patients in each clinic will be smaller to enable staff and patients to adhere to strict social distancing
  • For those patients who were told to “shield” staff will do whatever they can to limit the time that you need to be in the department
  • You will notice that the staff will be wearing personal protective equipment
  • You and everyone with you will also be asked to wear a face-covering when visiting the hospital from 15th June
  • Equipment (ECHO machine) will be fully cleaned in between patients.
  • Children should attend with only one parent or carer and adult patients should attend alone or if they require support with a maximum of one other adult.
  • Special consideration and adjustments may need to be made if a patient with learning difficulties or special needs require more than one person to support them. Please call your helpline ahead of your appointment if you feel this may be required so we can make appropriate adjustments

Please call your Congenital Heart Team via the patient helpline if you have any concerns.

 

Surgery and Intervention

All routine surgical and catheter intervention procedures for congenital heart disease were cancelled across the North West of England in response to the pandemic. Emergency operations and catheter procedures continued to be performed as needed. Over the past few weeks, we have cautiously restarted doing routine procedures and operations. The numbers of cases that can be done each week are reduced due to the need to adhere to social distancing rules etc. Therefore it is anticipated that the backlog of patients will continue to exist for some time and waiting times are likely to be longer than normal.

 

What to Expect

It is important that you or your child and the staff looking after you are kept as safe as possible. Therefore there will be new safeguards put in place to minimise the risk from COVID-19

  • You or your child will be pre-admitted prior to your operation or procedure as normal.
  • The Congenital Heart Nurse Specialist will give you specific advice as to what will happen to you or your child and will discuss any special measures that are needed for you
  • This may differ slightly between the paediatric and adult hospitals but may include one or more of the following:
    • You or your child may need to be swabbed for COVID-19. If you live a distance away from the hospital you can call NHS 119 to arrange to have your COVID-19 test done locally
    • You may be asked to self isolate prior to your operation or procedure. The Nurse Specialist will explain if this is required and for how long this is necessary prior to be admitted

You may need to be admitted for several days beforehand in order to be re-swabbed.

 

Travelling to Your Hospital Appointment

When travelling to a hospital appointment, patients should follow the general advice on safer travel. To view guidance, click here.

If possible you should use your own transport. However, if this is not possible and especially if you have previously been told to “shield” please call the Nurse Specialists to discuss what can be done to help you attend your appointment safely

Healthwatch has some useful general information for patients and families about help with travel. To view guidance, click here.

DO NOT visit anyone in hospital if you or anyone that you live with have a new cough and/or a high temperature or have been in contact with anyone with coronavirus symptoms 

In order to protect patients, staff and the public, hospitals are introducing new visiting arrangements. Please check these before you try and visit your loved one. The following restrictions apply in the following centres but are subject to change:

Alder Hey Children’s Hospital
Visitors are restricted to a maximum of one close family member or carer each day.

Liverpool Heart and Chest Hospital
From 25th March 2020, all visiting is suspended except for patients who are receiving end-of-life care or patients who need to be accompanied because of special needs.

Manchester Foundation Trust
From 25th March: No visitors will be permitted to any adult wards, other than in defined exceptional circumstances. The needs of patients receiving end of life care and patients living with learning disability, autism or dementia will be reviewed on an individual basis, and where appropriate one named visitor will be permitted at any one time. One named visitor per patient is permitted in the  Children’s Wards.

We understand that this information may cause you to be worried and anxious. Please call your Congenital Heart Team via the patient helpline numbers below if you have any questions about how this might affect you or your child’s care.

If you are concerned that you or your child has new symptoms related to your congenital heart problem please contact the Congenital Heart Team on the numbers below to discuss with a Specialist Nurse. We will make sure that patients who need to be reviewed urgently will be seen appropriately throughout the CHD Network during this pandemic.

ACE Inhibitors or angiotensin receptor II antagonists

Many patients with CHD or chronic heart failure may be on ACE inhibitors (e.g. Ramipril, captopril, lisinopril, enalapril), angiotensin receptor II antagonists (e.g. losartan, candesartan)  The British Cardiac Society, British Society for Heart Failure and European Society of Cardiology Council on Hypertension have said that there is no clinical or scientific evidence to suggest that treatment with an ACE inhibitor should be discontinued because of COVID-19. Stopping these medications may cause worsening of your heart condition.

Aspirin

Our recommendation is that patients who are taking aspirin continue on their treatment unless advised differently by their cardiac team.

Use of paracetamol versus ibuprofen

Although there is as yet no firm evidence, patients should use paracetamol rather than ibuprofen or other non-steroidal anti-inflammatory drugs (NSAIDs) to control fever and pain.

Removal of the Thymus

The thymus gland is routinely removed during some forms of cardiac surgery where the scar is at the front of the chest. There is no evidence that this constitutes an additional risk for infection.

Can COVID-19 trigger a Kawasaki like syndrome?

Most children are asymptomatic or exhibit mild symptoms from COVID-19 infection. However, a small number of children have recently been identified who develop a significant systemic inflammatory response. The Royal College of Paediatrics and Child Health have issued a statement stressing that it remains unclear whether paediatric multi-system inflammatory syndrome is caused by COVID-19 and reiterates that it has affected an extremely small number of children in the UK and throughout the world. It remains extremely unlikely that a child will become unwell with COVID-19, and it’s even more unlikely that a child will become unwell with this condition. If you have an unwell child, it probably isn’t anything to do with COVID and is more likely to be something else.

The Royal College of Paediatrics and Child Health has produced a useful to guide to help parents know when to seek help for their child when they are unwell. To view the poster, click here.

Helpful Videos to Watch

COVID-19 & Anxiety – Tips on How to Manage

COVID-19 Q&A’s with ACHD Psychologists

A Special Thank You from Our ACHD Patients

Cardiac Appointments – August 2020

CHD + COVID 19 Update & Advice – August 2020

How to contact the Congenital Heart Team if you have any further questions

Paediatrics Helplines

Alder Hey Children’s Hospital: 0151 252 5291
Royal Manchester Children’s Hospital: 0161 701 0664

North West Adult Congenital Heart Helpline

Liverpool Heart and Chest Hospital: 0151 254 3333

COVID-19 Advice for North West CHD Network: Advice for patients and families affected by congenital heart disease and children with other heart conditions pleaseclick here